dementia caregiver support: beyond the experience prof.dr. birgitte schoenmakers

27
Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

Upload: shana-greene

Post on 25-Dec-2015

220 views

Category:

Documents


0 download

TRANSCRIPT

Page 1: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

Dementia Caregiver Support: Beyond the experience

Prof.dr. Birgitte Schoenmakers

Page 2: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

I. INTRODUCTION

Homecare is of increasing importance in long term care of dementia patients

• prevalence of dementia home care in Belgium is 70%

• Home care in Belgium affects 2 000 000 relatives and

informal carers

• Waiting lists for residence admission

• Growing evidence that presence of family carers

on dementia patient outweighs the effects of psychotropic drugs

Sources: FOD Volksgezondheid, Kenniscentrum

Page 3: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

I. INTRODUCTION

Institutionalization

• 80% of all definitive dementia home care endings is related to

depressed caregiver

• Dementia is independent risk factor for definitive institutionalization

• Costs of home care exceed costs of residential care

• Number of applications largely exceeds number of places

Conclusions

• Process of decision making focus of future research

• Home care not unconditionally best solution

Focus on avoiding abrupt home care

Sources : Qualidem 2006, Schoenmakers B, ea, (2008) . Int J Geriatr Psychiatry. 2008 Oct 21.

Page 4: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

II. BACKGROUND

High volumes of literature on dementia home care

until last decade

• Conflicting results• Due to methodological issues• Due to a lack of consensus definition of dementia

caregiver

• Focus on wellbeing of dementia patients• Patient related outcome measures• Support directed to patient

Page 5: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

II. BACKGROUND

Definition

• Family caregiver: first described, not defined, in 1982 (Rabins, P)

based upon literature, policy guidelines and consensus

in focus group discussion following definition was composed:

“a family caregiver is person who from obvious reasons and on a regular base offers care

to a care depending related person in his direct environment

and who is not committed to any formal or professional care system”

Page 6: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

II. BACKGROUND

Outcome measures Depression

• Depressive mood – mild depression• Wellbeing rather than psychiatric diagnosis• Screen in a sensitive way cases at risk• Adopted by international consensus (Interdem 2008)

Burden• Subjective workload• no psychiatric equivalent• state of mind over short time span

Coping• Problem facing strategy• Adjustable over time and by learning

Page 7: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

II. BACKGROUND

Theoretical framework of this research

i. assumption: dementia caregivers are overloaded• Stressors of various origins• Mutual influence of wellbeing• Direction of causality based upon literature• Negative impact of care giving outweighs the positive aspects• Wellbeing of care is determinative factor in home care

ii. assumption: support should focus more on caregiver• Negative care impact can be lowered by support• Support highly appreciated but inefficient• No need of new support but facilitation of admittance

Page 8: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

III. RESULTS1. Impact of care-giving

Literature

Impact of care-giving is substantial• Depression in 30-80% of dementia caregivers:

Higher prevalence as compared to caregiversof other chronically ill patients

• Role of individual stressors unclear• Caregiver related features?

• Age, gender, relation, socio-economic status

• Patient related features?• Care need, behavioural disturbances, continence

Positive aspects related to care-giving• Unfortunately not in balance with negative impact

Source: Schoenmakers B ea. (2010). Maturitas, 2010, march 20

Page 9: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

III. RESULTS1. Impact of care-giving

On the field

Methods• population survey (n= 105)• Dementia versus non dementia caregivers• Primary outcome measures: depression and burden

Results• 30% depression in caregivers• Onset of depression in dementia caregivers was unrelated to patient

characteristics • Depression was triggered by burden and an inefficient coping strategy• Depression rates decreased after 1 and 3 years of follow up...

strong survivors? normal fluctuation?

intervention effect of visits?

Source: Schoenmakers, B, ea. (2008). The European journal of general practice 2009 July 4:1-8.

Page 10: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

III. RESULTS1. Impact of care-giving

Conclusions

• Dementia care-giving is a heavy job

• Patient characteristics are not the

main determinants of a negative care impact

• Coping predicts the care impact

• Care impact fluctuates over time

Page 11: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

III. RESULTS1. Impact of care-giving

Implications for further research and policy guidelines

• Inventory of objective care need should be completed with ratings

of care need by caregiver

• Coping concept should be explored as the link between stressor

and impact in dementia home care

• Intervention in home care should be altered

along the above principles

Page 12: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

III. RESULTS2. Support to caregivers

Literature results: non pharmacological interventions

6 large groups of interventional strategies

Psychosocial interventions, respite care, multi-media based support,

case management, physical exercise, communication skills

Highly appreciated but with poor efficacy in terms

of outcome measures

• Slightly positive effect of psychosocial intervention on burden

• Slightly positive effect of case management on depression

Source: Schoenmakers, B, ea. (2009) Aging and Mental health, April 2009 

Page 13: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

III. RESULTS2. Support to caregivers

Literature results

Methodological issues

• Population bias: recruited from health care centres

• Small sample sizes: burden of participation

• Poor reporting of carer characteristics: focus on patient

• Short term follow up: 6 to 12 months,

while a mean duration of home care is 3 to 5 years

• Control conditions lacked: waiting lists, augmented usual care

Page 14: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

III. RESULTS2. Support to caregivers

Literature results: Pharmacological approach

Strategy: Suppression of troublesome behaviour by psychotropic drugs

Assumption: behavioural disturbances important source of stress in caregivers

Drug-types: cholinesterase-inhibitors, anti-psychotic drugs, antidepressants

Results:caregiver time spent and burden decreased over a short term follow up

Critical issues• Sample bias• Duration of drug administration• No sufficient data on caregivers

Source: Schoenmakers, B, ea. (2009) Fam Pract. 2009 Aug;26(4):279-86

Page 15: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

III. RESULTS2. Support to caregivers

Literature results: the GP’s role

• Attitude of GP: aware of skills and limits, theoretical knowledge good, disclosing diagnosis weak but confident in

treatment matters, time consuming and frustrating no key role?

• Expectations of relatives: find GP helpful and comprehensible but regret lack of empathy and time

• Needs of GP and relatives: education, care support

Source: Schoenmakers, B ea. (2009). Scandinavian Journal of Primary Healthcare, 2009; 27 (1).

Page 16: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

III. RESULTS2. Support to caregivers

Literature results on support to caregivers

Conclusions

• Efficacy of home care is disappointing

• No instant or long term effect on wellbeing of caregiver

• No need for new or more sophisticated supportive

interventions

• Need for fine-tuning existing support and facilitating of

accessibility

• Non pharmacological support combined with a

pharmacological approach under certain conditions

Page 17: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

III. RESULTS3. Field study: the evidence

Background

Dementia care-giving is stressful

Premature or acute home care ending in 80% of cases

directly related to depressed caregiver

Adequate coping-strategies protect against care impact

Objective care need of patient is not related to stress in caregiver

Interventions are highly appreciated but mainly ineffective

No need for new interventions

Page 18: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

III. RESULTS3. Field study: the evidence

Research question

“Will the intervention of a care counsellor, supporting

In a non hierarchical, multi-disciplinary quasi unstructured

way prevent from depression in the family caregiver? “

Methods

Randomized controlled design

• no blinding but subjects were not informed of ongoing intervention

Frail community dwelling elder, labelled with cognitive impairment

• Minimum of care dependency

• Screening with MMSE, excluded >22/30

Page 19: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

III. RESULTS3. Field study: the evidence

Methods

Care counsellor intervening on fixed moments

Three monthly visit, monthly phone call, within permanent

reach

Control group passively directed to usual care

systems

Outcome measures:

• Primary: depression in caregiver

• Secondary: anxiety, burden, coping

• Quantitative inventory of care support

Page 20: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

III. RESULTS3. Field study: the evidence

Results at baseline

Sample size n=62

100% visited by home nurse (see recruitment strategy)

50% visited by home assistant, physiotherapist or cleaning service

30% of all caregivers depressed, most felt burdened

Patients showed

• moderate to high frailty

• mild to moderate cognitive decline

• In 30% behavioral disturbances

• In 75% continence problems

Page 21: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

III. RESULTS3. Field study: the evidence

Results after one year

Odds ratio for depression in treatment versus control arm was 0.16(confidence interval 0,03-0,83)

• Odds ratio was not influenced by patient or caregiver characteristics: Due to small sample size multivariate analysis was not feasible therefore0dds ratios were calculated for each variable

Page 22: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

III. RESULTS3. Field study: the evidence

Results after one year

Intervention overview• One extra phone call• 10 applications for support

• Only 4 carers asked extra visit• 6 carers were proposed a new intervention, only 3

effectively carried out• No significant difference between help seeking carers

and others

Formal care support remained stable in both groups

Page 23: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

III. RESULTS3. Field study: the evidence

Discussion important decrease in depression rates while formal

support remained stable:• Hawthorne effect?

- Carers not informed of ongoing trial- no decrease of depression in control group

• mean depression scores were equal in both groups:- only mildly depressed caregivers took advantage of intervention

Weakness: • Small sample size• Effect higher than expected

Strenghts: • Control group conditions• Low impact on daily living of carer

Page 24: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

III. RESULTS3. Field study: the evidence

Discussion

Comparison with other trials

• Callahan 2006: control group with augmented care

• Charlesworth 2008: befriending to carers

• Case management programs: fixed program, not adjusted

to individual needs

Page 25: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

III. RESULTS3. Field study: the evidence

Conclusions Implications for further research and daily practice

• Caregivers organize home care themselves

• Home care remains stable, independently of feelings of burden or

depression

• Minimal intervention of care counsellor and permanent availability

can make the difference

• Home care should become more accessible

• Institutionalization as outcome measure? Long term follow up

• Cost analysis?

Page 26: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers

IV. CONCLUSIONS

Family caregivers are a frail but indispensable link in home care Frailty as hidden patient Partner in care

Family caregivers organize home care themselves in a more or less successful way

Professional caregivers inventory home care in an objective way but do not fully meet the needs of family carers

Interventions are therefore appreciated but can be more effective by fine-tuning on individual needs focus on both patient and carer Permanent availability

Home care landscape is extended but fragmented: Personal guide through home care could alter depressive

feelings and prevent from premature home care ending

Source: Schoenmakers, B, ea. (2008) Editorial, Dementia 2008.

Page 27: Dementia Caregiver Support: Beyond the experience Prof.dr. Birgitte Schoenmakers